Ask Questions, Learn More, Express Yourself
It is always good to learn about the conditions you're living with in depth to know about yourself and potenial treatment options. Since I was 6 years old, I've been asking questions to learn more about the brain, what seizures are, and how to treat my epilepsy.
Learning about my epilepsy
Sometimes our epilepsy medication can have side effects like depression, serious aggression, or mood swings. Remember, things will get better as time goes on. I wrote the poem below after being hospitalized 2017 to let emotions out – we have to find ways to cope. I also did more research on epilepsy.
Being grateful and hopeful when I can
I have surgical scars on my head, neck, and chest from the VNS (vagus nerve stimulator) being implanted. As well as scar tissue that formed, but sometimes things happen for a reason. And I am thankful for being alive. At points of time you have to be thankful for the most odd things, too.
Soon there will be a cure for all of us. I am hopeful. Below is a poetic piece I wrote – a talent I got 2 weeks after my diagnosis.
A poem about my epilepsy journey
Scar: What is a scar? Something felt on the body everyday, fibrous tissue that replaces normal tissue destroyed by injury or disease, mental memories that emotionally hurt, tingles on the head, that is a result of humanity
Scar tissue: forms many different ways, soft tissues including tendons and ligaments are made of collagen, which is a substance that looks like strands of rope wound together into a net-like formation, fascia, injury, born with or infection occurs, it causes frays, kinks and bends in the collagen strands of the fascia which creates the scar tissue
On the brain: Creating a condition, electrical impulses, caused by neurons firing at a fast rate, abnormal brain waves, a seizure, epilepsy, fear
Cortical dysplasia: unnormal, abnormal, not normal brain development, neuron failure in specific locations, brain failure for proper formation
Learning disability: behavior, cognitively off, memory difficulty, short-term attention, slower reading, forgetfulness on how to say words, the simplest math needs to be done
over and over again
Phenobarbital: a barbiturate, addiction, decreased consciousness, effects memory and cognition, able to intoxicate, slows down neurons, bone decrease, osteoporosis a true experience
Mood swings: a random and extreme change of mood and emotions, causes sleep patterns, stress, loss of self-esteem, loss of concentration, neurological disorders, epilepsy being one, changes in electrical activity causing dramatic mood swings, can play a positive role in problem solving, producing and planning, lasting for minutes to months
Spinal tap: performed in the lower back, needle inserted between two lumbar bones, removing fluid surrounding the brain to find out if there are any serious health syndromes, to make a diagnosis such as viral encephalitis or meningitis
Diagnosis: determining a disease or condition concerning the person's symptoms
Cure: the end of a medical condition, or disease
When: is the question
Coping with epilepsy
Sometimes coping takes more than doing the research and asking our doctors the questions. Sometimes we must also cope through creativity and expressing ourselves.
Have you taken our In America Survey yet?